Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Couldn't Tolerate The Gluten Challenge

Swansong

Recommended Posts

Swansong Newbie
Swansong
Posted

Hi Everyone,

After being sick with IBS for the past 30 years, a new doctor suggested I might actually have Celiac Disease. By the time I finally got the pre-diagnosis, I couldn't even get out of bed, I was so weak and unable to keep any food in my system. I started my gluten free diet in July 08 and have been off wheat and gluten since then, but although I am definitely improving, I'm still not doing as well as I'd hoped.

My doctor suggested a gluten challenge for a firm diagnosis. Well after being gluten free for 6 months, I started eating wheat again as he suggested. He asked me to eat wheat for 4 weeks prior to the endoscopy, but I only made for 3 days and then I was flat on my back again. I stopped eating the gluten and opted not to have the test done.

I am wondering how many people here have actually received a formal diagnosis, and how many like me, have gone gluten free without it.

I'm glad to have found this resource.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
Hi Everyone,

After being sick with IBS for the past 30 years, a new doctor suggested I might actually have Celiac Disease. By the time I finally got the pre-diagnosis, I couldn't even get out of bed, I was so weak and unable to keep any food in my system. I started my gluten free diet in July 08 and have been off wheat and gluten since then, but although I am definitely improving, I'm still not doing as well as I'd hoped.

My doctor suggested a gluten challenge for a firm diagnosis. Well after being gluten free for 6 months, I started eating wheat again as he suggested. He asked me to eat wheat for 4 weeks prior to the endoscopy, but I only made for 3 days and then I was flat on my back again. I stopped eating the gluten and opted not to have the test done.

I am wondering how many people here have actually received a formal diagnosis, and how many like me, have gone gluten free without it.

I'm glad to have found this resource.

Hi Swansong, and welcome to the forum.

Nothing! could have convinced me to resume eating gluten to get tested. The results of being gluten free were good enough for me. I don't give a hoot what the tests could have showed. You will find there are quite a few of us.

rinne Apprentice
rinne
Posted

Hi and welcome. :)

Add me to the list, the day the gastro suggested celiac as a possibility was the day I quit all gluten. I had known for years I had problems with bread and avoided it but I hadn't understood about gluten. The endoscopy was scheduled for five months after that and there was no way I was ever going to eat gluten again so I passed on it.

If you have been diagnosed with IBS for thirty years then you may have damage, it takes time to heal.

Is your doctor checking your vitamin and mineral levels, quite likely you will need to figure out how to bring them up and sometimes adding supplements doesn't work so well when our digestion is challenged. I suggest high quality supplements that come in a liquid form, B vitamins you can get through shots and if you have no energy that could make a huge difference.

I am glad you finally found a doctor willing to test for celiac, there is a strong possibility that you may have had it all along and not IBS which some say is simply a doctor's way of acknowledging, "I Be Stupid". :lol:

The blood tests for celiac are notorious for not diagnosing it. :o The endoscopy also may miss it as the damage may be spotty, the question is do you feel better when you don't eat it and it seems pretty clear that you do. :)

Swansong Newbie
Swansong
Posted
  • Author

Thanks for replying! I stayed up very late last night reading some of the topics on this FORUM, and it's nice to hear from others who have the same condition. When I first became acutely ill last July, I was terrified that I had crohn/colitis, because my symptoms were so similar. My son, who is now 30 years old, had his colon removed in 2003. He almost died from blood loss and infections, so I have seen firsthand the devastation of that disease. I was kind of relieved when they ruled out those diseases for me, but Celiace Disease is no picnic either.

I am currently investigating supplements, and appreciate the input about liquid supplements.

Gfresh404 Enthusiast
Gfresh404
Posted

Add me to the list as well. First year of college got really sick, lost almost 30 pounds, I was already a little underweight, 6-2 and 160lbs. Saw a GI, thought it might have been Celiac, so he tested for that. Before I got the results I went gluten-free and noticed some improvements but immediately stopped that after finding out the tests were "negative" for Celiac. If only I had known what I know now. Then had Endoscopy, no damage was found. After two months of messing with my diet, I started eliminating my problematic foods. Started with dairy and then eventually wheat and finally gluten. 6 weeks later of being gluten-free I had the full Celiac blood panel, negative of course. And they looked for DQ2 and DQ8, both negative again.

So regardless of what any test says, it is important to listen to your body. If gluten-free works for you, keep doing that, I know I will.

Keep in mind that our knowledge about this condition is still very limited.

caek-is-a-lie Explorer
caek-is-a-lie
Posted

Count me in for the non-diagnosis. I wouldn't be able to tolerate a challenge. But that's ok because my doctors take my gluten intolerance seriously even without a formal diagnosis.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748
    pilber309
    Newest Member
    pilber309
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.